Tuesday, January 16, 2018

No Easy Answers

We've fought through throat cancer treatments and recovery. We seemed to do so well after that until the stroke came to strike out hard.

Well, the recovery physically from the stroke was amazing. Rich could walk, and move with no after effects. His speech had issues but most people can eventually get what he is trying to convey.

Then winter came on. Typically winter is his most difficult time anyway. Mentally it is draining because the weather is cold and the days are dreary. However COPD plays a huge factor in this too. 
Too cold? He can't breath outside. The cold air sends his bronchial tubes into spasms and it feels...well. No other word to describe it, like suffocation. Even with something over his mouth periodically to warm the air. Breathlessness or dyspnea is not a nice thing to feel. 

During the extreme cold days I have done the chores by myself. Even I have a bit of trouble while hauling a sled full of hay up the where the two of the bulls are kept. It is a steep walk in the summer and the winter. Extremely hot humid air and extremely dry cold air are enemies of getting your breath.

Depression has set in. It is like having a huge Black Cloak hanging over his head. Most mornings I pour his coffee when he gets up and give him a kiss. The he sits and stares out the window. The difference now compared to a year ago is the blank look of nobody there when I glance at him. I ask what he is thinking and he blinks as if the sound of my voice brought him back from....what he describes as 'No Where'.
He visits No Where quite often these days.

And when we do converse he talks about how he is no longer of any use, he has no purpose. If he weather is good enough for him to venture out and help with the morning chores, he gets dressed and goes about the morning routine.

When we come back in, he sits and stares off into No Where. Eventually he says that he *is not worth a damn* and gets up. He walks to the bedroom and goes to bed asking me to wake him up when it is time to water the stock.

Tremors. I'm not sure what to think of them. His father had what was called "Essential Tremors".  Rich has had them for a long time but they were a problem. Now they are in a very severe way. He can't carry a coffee cup across the room without spilling a trail of coffee. He feels terrible about it.

As his COPD meds are increased, I see a direct increase in the tremors. I looked up the causes of ET and found that COPD meds contribute to it. What a mean thing. COPD requires certain meds which in turn can contribute to worsening of the ET.
NIH had articles relating to the fact the ET are familial. In other words, it can run in the family. Rich's father had ET, Rich's mother has ET. It affected his fathers voice, it affects his mother's voice. At the young age of 68, it is affecting most actions that Rich takes along with his voice at times now also.

COPD unto itself is an insidious disease that is not curable. The doctors tell you to stay active. Simple to do if you can breath. 
Rich does stay as active as he can.

But the viscious downward spiral of COPD, the results of the stroke, the tremors, and feeling lost all add to a fairly significant winter depression. 
He feels somewhat hopeless and helpless. 

His only escape is to go sleep. And sleeping most of the day and the night do not help any of his health issues.

I find it interesting that the doctors say: You are doing so well! You made such a miraculous recovery from all the things that have been thrown your way!

To this man, each fight he's gone through has taken away a part of what he wanted to be and defined himself to be.
One counselor asked him to consider the fact that this would be his new normal.

I understood where she was going. Accept this and move forward.

I may be the type of person who can do that. But he can't.

He has always been a 'fixer'. If there was something that should be fixed, he'd fix it. Replace brakes? Muffler? Build a new and improved dog house? Insulate a water tank? All these projects are partially started and now sit gathering dust. 

He can't fix himself. He feels if he could understand exactly what went wrong, he could fix it.

In the past two weeks he has had other slight incidents that lead me to believe that he may be having a TIA. It happened quickly and was gone. Poof. 

Before I get told to rush him to the ER. I have. The results have not been exactly stellar. 
To be fair, the local hospital did do a good job in making sure that he was transported to the nearest trauma center. But only on orders from the VA.

Is there an easy answer to all of this? No.
Of course not. 

Saturday, January 6, 2018

Finding Resources

ADRC, we are pretty lucky to have ADRC in our state. I'm not sure this organization is in all 50 states or not. However there is a very simple and helpful site on the internet called Eldercare Locator. Simply type in your zip code and a list pops up on the next screen with what is available in your area.

I had a very good meeting with Tricia from ADRC. Finding help or a support group for caregiver is daunting. When Rich had cancer the Madison VA offered a support group.... the drive would have been two hours one way for a caregiver's meeting and 'workshop'. Um.
Nope, that doesn't work.
Gunderson Lutheran in LaCrosse offers a once a month meeting for Stroke CareGivers. One hour drive.
Nope, that doesn't work.
The Tomah VA offers a once a month meeting for CareGivers to Veterans. Hour and a half travel time one way.
Nope, that doesn't work.

Tricia commented that they have a support group for CareGivers for Dementia and Alzheimer's patients. This may be a good fit as Rich has trouble with communication and memory too. I said I'd go. After all, meeting with other people who are going through similar situations can only be a plus for me. Besides that, it is 20 minutes from home and I get to see other people.

I know, that sounds awful doesn't it?
I've convinced Rich that we'd even try the Memory Cafe in February.

We quickly moved into other areas of concern. Tricia made a phone call to the VSO [Veterans Service Officer] downstairs and she came up. We went over some of the things offered by the VA.

My other concern was trying to get some assistance or help for my reluctant Mother in Law. She has declined in health and in her ability to do things for herself.
I'm having a tough enough time getting everything taken care of in my own place, let alone trying to take care of her and her place too. She has a once a month housekeeper. That is just not cutting it at all. Her little apartment was filled with trash on Christmas Eve along with mounds of dirty dishes. She just said she couldn't take the trash out and just didn't feel like picking up.

Anyway, there is a stipend that we can get through the VA to assist us in helping Mom. Interesting.
She could get help from the state and county if her assets were two thousand or less.
However, we can get some assistance through the VA because we are assisting Mom. Okay, it sounds weird, but it would allow me to hire a certified Home and Personal Care Helper ... well something like a once a week in home helper that could do light housekeeping, assist with running errands, shopping, and at some point personal hygiene. The average price for hiring someone like this is about $19 to $25 per hour. I cannot afford that for her on my own so this is an alternate choice.

It is cheaper to help an elderly person stay in their home and help them, than it is to transfer them to a care facility.
I know we had approached Mom to get in touch with ADRC more than once and she said no.
Now we have to tell her that WE will get her the help. I hope she takes it.
Yesterday I got called out of the blue with an urgent..."I need my pain prescription!" I ran to town and picked up the script and delivered it. I couldn't stay as I had to get back for evening chores and for Rich.

A quick glance around the apartment told me that she hadn't changed or made her bed in a long time. Her hair was matted and she basically looked pretty gnarly. She told me that her legs had swelled again so tight that she couldn't hardly get out of her chair.

We will be going to her apartment today or tomorrow and presenting her with the option of some help.
I can't knowingly let her live like this. Yet I can't watch over Rich and take care of her also...

I spent the next 2 hours with Cyrstal from the VSO office. We put some paperwork together for Rich filing also for Agent Orange. There will be no money for that, just getting his record updated to include his AO contamination.
Apparently the VA is accrediting COPD and lung issues along with a huge variety of cancers to AO. Good to have those on record now and not later.

The last bit of work I have to do is file to be Rich's official CareGiver. I will be taking a class through the VA but provided through the county office. This last filing if approved [lots of paperwork and a doctor visit] would assist us and 'pay' me to take care of Rich.
Are you ready for the huge amount?
Nearly $30 per week!

I will not complain. It may help out with groceries right? However the bigger bonus will be that I will qualify for respite care which I anticipate needing in the future. IF I don't take care of me, no one will take care of him.

So I am leaving anyone who reads this with a few thoughts.

Don't wait until it is too late if you have an elderly person in your life. See if you can sit them down and talk to them.
Do your research now.
Because ... tomorrow ... or in a few years, we will be that elderly person who will need these resources.

Thursday, December 28, 2017

Severe cold and Depression Suck

It used to be that you didn't dare use the word 'suck' in your writing as it would offend someone, somewhere. However our world has changed a bit now hasn't it?

I contacted ADRC which I said I would but only because things sort of came to a screeching 'whatchyamacallit' this week.

The cold weather has taken its toll on Rich. He has such a hard time with subzero temperatures. I've let him do what he could so far this winter. However since I knew things were going to get very cold, I moved the second batch of cattle into a larger area and we put out a bale feeder. Now they can all feed at their comfort and drink from one large heated stock tank.
Clap clap clap, hurray for me!
There are still 3 places to carry water to and if I do it with small buckets and make more than one trip, I can get it done by myself.

We got the house all spiffed up for the 'kids' to arrive. Arranged for mom in law to come over. We planned how we'd pull up right next to the one little step and lay out a non slip rug...we even discussed having 'spotters' for her.
I bought a cover for the couch instead of the old ugly looking thing I've used forever. It actually looks nice and Morris loves it.

Rich was having such a hard time with being outside I got up early and took care of all of the chores. I gave the hounds new bedding and heaped up the wonderful smelling pine shavings. They were grateful as could be.
I pried the fodder bales with a pitch fork and the cattle seemed to smile at me.

Then the phone call. The 'kids' couldn't come. When Rich hung up the phone it seemed as though his face had *transmorgified* yeah...not a word, but there you are. The light died out of his eyes and he announced that he was going to bed.

Later that day we talked.
Him: Why can't I do anything?

Me: What can't you do?

Him: I can't do chores, I can't breath, and... maybe...
I waited.

Him: Maybe I'm depressed. Why am I like this?

Me: [I clutched my hands together below the kitchen table] Well, throat cancer took its toll, the stroke has not been an easy thing to over come. You look good, you look fine, but...with what you have been through in the past two years? It has beaten the crap out of you.

Him: You are saying I'm [he stops, looking for a word as he often does...] having get to older.

Me: Well, I am getting older also. [I understand so much of what he wants to say, however it is often the same conversation each day now.]

Him: You aren't like that. You are going to getter.

Me ~ I stand up and hug him. His speech gets very garbled which indicates his frustrations and sadness. This is how he is now.
When he gets upset or down, he loses words and thoughts.

Me: I do love you.
Him: I'm going to nap.

Well I sit down and compose an email to our local ADRC [Aging Disabilities Resource Center]. I ask for help, I ask for some tools to deal with my husband.

I want to hug him, I want to yell at him. I want to hold him and I want to throw things.
I need to stay healthy and sane to help him.

I write a note to self. Call his doctor at the VA. Is it a bigger COPD issue? Mental health issue? Physical issue? How can I make his days more meaningful? How can I help him day to day and not lose my temper.

Perhaps Tricia can help. We will be meeting on the 3rd at 1PM.
I know I won't find the answers to everything, however I will be able to go in some sort of direction.

Sunday, December 17, 2017

The End Game

Well here we are. The last entry in this blog was 8/16/16.
Rich had just completed one of his last check ups with the oncology department.

Let's jump forward to present date.
On May 6th Rich had a stroke.
I wrote about it afterwards on May 12th.

I kept up with updating things and how I resigned from work 3 days after the stroke to stay home and assist with my husband's recovery.
He is an amazing man.

Cancer was big and scary. And it still hangs over our heads like the Sword of Damocles. Will it come back? Can it come back? Will we fight with it? Well, the answer to the last question is no. The other answers are unknown. Who knows what is in the future for us right?

I am now an unemployed caregiver. That is fine, everyone says how nice it is to be 'retired'. I'm not sure retired is the proper term at all.

Caregiver: A family member or paid help that looks after a sick or disabled child or elderly person.
Retired: Ceasing work. Having finished one's active working life.

I think unemployed caregiver is the proper term. Let's add. Farm help, chore person, house keeper, chief cook, and bottle washer. Appointment maker and so on.
Actually the whole process has been fairly good. Financially things are a bit tight, but all of our years of being frugal has paid off. We owe nothing on our vehicles and the only item left is the remodel loan.

I had felt that I'd be able to return to some sort of work by now. But that isn't happening.

Rich's COPD is not getting better. I don't know if it is related to the stroke or just the insidious disease marching down its timeline of destruction.
I know that sounds gloomy, but I am being pragmatic. It has always been the 'elephant' in the room. There is no cure and the end result is death.

So what is our next Long Road?

Our next long journey will be dealing with the after effects of the stroke, the continuing task of living with COPD and how we end up dealing with our lives until the end.

One thing we are not afraid of to discuss in our little house is death. It is there and it will be the end game for all of us.

So I will continue to write things here regarding how we deal with health issues and the end of life.

Tuesday, August 16, 2016

14 Month post Cancer follow up

Today is the 14 month post cancer follow up. 
That word still lingers in the back of our minds lurking as we continue to go through appointments with ENT, CAT scans, and mild scares from 'something showed up' we need another scan.

To...it was nothing.

However the good news is that Rich is doing better and he has this behind him. 
He also told the doctors that he wouldn't ever go through treatment again. I know he is solid in those thoughts. Chemo nearly killed him and he reacted so poorly to it. 

I'm hoping that our follow up visit will be another one where Dr. Witek slaps him on the back and tells him he is doing well.
We may have passed that magical one year date and now look forward to a 5 year prognosis.

Statistics show that if the cancer is to return, it will in the first year...or within 5 years.

So we still live with a cloud over our heads. However that cloud feels pretty distant at this time.

Friday, March 25, 2016

Follow ups and follow ups never end.

Archived Photo

One thing seems to keep leading to another.  We finally got seen by the surgeon who would do the 'eyelid' lift to increase Rich's vision.

After examining him and then calling in another doctor, the decided they wouldn't do any eye surgery until he saw Dermatology.  They poked and prodded around his face and asked many questions.
History of skin cancer? 
Anyone in the family have skin cancer?
A lot of sun exposure as a child?
Chemical exposures?

"We can't do the eye lid surgery until after dermatology does surgery on these multiple areas."
The doctors poked on his face some more and then their fingers brushed his forehead. 
"We may have to use all this nice excess skin to make skin grafts to cover up scarring. Dermatology will use the Moh's Method to take out the lesions and depending on how deep they are well, that will determine the scarring."

Rich shrugged.  I cringed.  I'd seen photos of the Moh's Method and well, it was not pretty but usually it healed up quite nicely.  Multiple spots? To not do surgery was inviting the cancer to spread and kill him.
I wondered how long had those spots been there?  Of course it wasn't something that a normal person would recognize as cancerous.
Hate hate that word.

We ended this appointment with a promise that Dermatology or Derm, would call and set up an appointment.

We are now one year an 12 days out of the Throat Cancer diagnosis.
More on that later.

Wednesday, February 24, 2016

Appointments and February Blahs

Rich still feels as if he has no energy and he is not really gaining any weight back.  This of course is a hard time of the year for him anyway.

Right now he is having the doldrums.  The overcast days have got him in a down mood.  Well, as he said. "I'm depressed.  I'm not getting better, I'm not getting my energy back."

When he is like this, there is no discussions to be had.  One just has to listen.  I can't point out to him that he is still alive and that he did have a great day out on Saturday when he went to an auction with the neighbor.

These things don't really matter much to him at this moment.  It is how he feels internally what matters.  He has stopped doing Tai Chi. I tried to get him to do it again.  But he just gives me the look.
He is supposed to be doing physical therapy but he has dropped the ball on that too.
I think part of it is that it is so muddy that doing anything outside right now is a huge chore.  When it was so cold two weeks ago, he had some trouble with doing things outside and breathing.

He has COPD and I think that the Throat Cancer and treatments may have made it worse.  That makes doing daily things a lot tougher. And unfortunately he feels that he should somehow be much better.

I have pointed out to him that he actually is doing more than he was pre-cancer.  But he can't see it.

I know once the winter blahs go away and the weather gets nicer, he will go into his 'spring' mode. At least that is what I am hoping.

We go for the CT scan and meet up with the Eye Doctor tomorrow.  I will ask the doctor how long of a recovery time he'll have with the eye surgery.  Rich is under the impression that he will be back at things the next day.

I am trying to be very positive for Rich and sometimes getting the dark look of gloom doesn't make it easy.
We take this time of year one moment at a time.
One foot in front of the other.